Columns

I’ve always loved the Christmas season. But Christmas, like other holidays, can be hard because it delivers a stark reminder of what — and whom — we no longer have. And I can’t help but think about the fact that this will be my fifth Christmas without my sister.

Have you ever celebrated Thanksgiving without turkey? Maybe you don’t like the taste of America’s famous game bird, or perhaps it’s just not worth the work. But what is Thanksgiving — a holiday focused on food — to someone who can’t eat? More than four years after her death, I…

My sister, Taylor, always loved All Hallows’ Eve. But the beginnings of blindness hampered Halloween fun almost a year before we knew she had CLN1 disease, or Batten disease. I remember that crisp, cool autumn night in 2005 almost like yesterday: Taylor often stumbled while trick-or-treating and occasionally…

In the terminal days of August, as summer made one last stand, I completed a couple of two-mile jogs on the streets of the South Carolina border town I’ve called home since 2016. I used to regularly log 60-mile weeks, so in one sense at least, these abbreviated “runs” shouldn’t…

I didn’t have high expectations when I slipped into the crowd at the starting line of this month’s Beach to Beacon 10K race in Cape Elizabeth, Maine. After all, I hadn’t gone for a run in seven months following major ankle surgery. Instead, I spent most…

At 8:12 a.m. on Saturday, Aug. 6, about three hours after the sun’s first light washes over the coast of Maine, I’ll take the first steps in the back half of my quest to complete a race in all 50 states. But I won’t be racing. When I won the…

I recently stumbled across a LinkedIn post by Joe Monaco, a business development manager at Motorola. But Joe’s words, which garnered more than 206,000 likes and 3,100 shares in just two days, had nothing to do with his day job. Instead, they accompanied a photo of two of his…

The world expected little from my younger sister, Taylor. And why shouldn’t they? After all, her diagnosis of CLN1 disease (Batten disease) at the age of 7 defied dreams for her future. Science said that instead of living life to the fullest, she’d simply lose it. But Taylor…

Equal parts beautiful and bold, my sister, Taylor, knew how to get what she wanted, whether through earnest effort or effortless charm. The youngest member of her family by 11 years and often the youngest student in her class, Taylor nevertheless wrapped everyone around her little finger and didn’t…

Like life, Batten disease is a game of inches. Get approved for physical therapy? You may walk long after your eyes stop working. Get denied those services? You may stop walking long before modern medicine says you should. Consume the perfect cocktail of anti-seizure medications? You may just have a…